Living with an Invisible Illness, Part 2

April 16, 2016

If someone told me that one day I’d be writing about the Real Housewives of Beverly Hills on my website, I would have told them they were crazy. But here I am: not to admit my guilty pleasure (although that cat is now out of the bag), but to discuss a topic that happens to be getting some attention in the reality TV world: invisible chronic illness.

Anyone who’s been following the RHOBH knows that one of the major “storylines” from this season has been Yolanda Hadid’s (formerly Yolanda Foster, at the time of filming) battle with chronic Lyme Disease. Although Lyme Disease is not an autoimmune disease, they can share a lot of similar symptoms: joint and muscle pain, brain fog, extreme fatigue, and flu-like symptoms, for example (not to mention more longterm complications), all while perhaps the patient “looks fine” on the outside. So needless to say, I felt a strong connection to Yolanda while witnessing her struggle. Although my battle is different (I have Crohn’s disease, which has branched off to also include symptoms of fibromyalgia, chronic fatigue, eczema, and other ailments), at the end of the day, I felt like I was watching myself (minus, of course, the beautiful penthouse apartment and the on-call “health advocate”). The battle of fighting debilitating symptoms is something I’ve known all too well, and as much as I hate to see anyone suffering, to see someone like Yolanda Hadid representing an “invisible illness” on TV was strangely comforting. On, what I would call, an unlikely platform, there was someone providing a voice for the rest of us often voiceless sufferers.

But I became quite shocked as the story started to unfold. Viewers watched as Yolanda’s fellow cast mates started to question her illness. The term “Munchausen” came up quite a bit, as did accusations of a misdiagnosis or even depression being the cause of her seemingly mysterious symptoms. Viewers watched as Yolanda endured a seven-hour surgery to have had her severely leaking breast implants removed, and it doesn’t take a rocket scientist to know that the toxins that had leaked from her implants probably had a majorly negative impact on her health. But that doesn’t necessarily mean she doesn’t have Lyme’s or that she has been faking illness to get attention (although it’s not uncommon to be misdiagnosed since these type of symptoms are vague and mimic so many other conditions). The truth is, illness is often an accumulation of triggers, and it’s often difficult to pinpoint exactly what all those triggers are. At the end of day, many of us who are chronically ill are always searching for answers, regardless of what diagnoses (or lack of diagnoses) we receive, because the bottom line is we are suffering, and we simply want to get better. Still, in Yolanda’s case, many outsiders felt the need to criticize and pose doubt, and before you could say Munchausen three times fast, the rumors seemed to be everywhere: on the show, in the media, on social media threads. It’s funny how may people have an opinion when they are not walking in the shoes (or should I say, laying in the bed) of the person who is ill.

I’ve written about my take on Living with an Invisible Illness with the hope of helping others understand this very misunderstood situation, and it’s clear more than ever that a discussion needs to be had. It’s hard enough to live with an illness that takes everything away from you — often your career, your relationships, your entire life — but to have outsiders question your motives (and your sanity!) is heartbreaking on a whole new level.

How anyone could question another person’s illness is beyond me, but I have to wonder if perhaps it’s because all of this comes upon the heels of a storyline on another Housewives series (this time, the Real Housewives of Orange County), where alleged con-man Brooks Ayers allegedly faked a cancer diagnosis in order to allegedly gain sympathy from those around him (did I mention all this was alleged?). So now that we’ve seen it can happen, I can see why viewers are on alert. Still, most of us know that the Ayers stunt is the exception, not the rule. There are millions of people suffering from chronic, longterm illness, and the idea that we now might have to prove ourselves or answer to outsiders is rather ludicrous (thanks a lot, Brooks!).

As someone who battles chronic illness on a daily basis, I could easily get offended by this trend. But I also have to take a step back and look at it from an outsider’s perspective: if one has never battled a chronic illness themselves, how could he or she possibly understand? This is where awareness and education play an important role. Although some viewers didn’t find watching Yolanda’s illness very “entertaining,” I’m very grateful that Yolanda decided to stay on the show and share her battle. Of course, I can relate to it on a very personal level, and suddenly my guilty pleasure show has a little substance, a kind of substance that might educate a few people. Even if people are questioning Yolanda’s illness, my illness, or anybody’s illness — hey, at least they’re talking about it. And that’s always the first step toward educating and (hopefully) encouraging compassion in others.

For anyone questioning experiences like Yolanda’s, let’s clear up a few myths about those of us who suffer from chronic illness:

• Invisible Illness Myth #1: That person looks fine, so they can’t be that sick.

• Reality: There is a wide spectrum of invisible illnesses, including everything from diabetes and cancer to a seemingly endless list of autoimmune diseases. It’s impossible to know what kind of battle is raging within another person’s body by just looking at them. One can look perfectly fine on the outside, yet be battling pain, extreme exhaustion, or other debilitating and life-altering (and sometimes life threatening) symptoms. This situation is more common than you might think, and it’s important to remember this before writing someone off as a hypochondriac, or even worse, a liar.

• Invisible Illness Myth #2: That person is faking or exaggerating their illness to gain sympathy or get attention.

• Reality: Although a short-term illness might garner some sympathy and attention, the opposite is usually true for those suffering from longterm illness. Good people will always rally around those going through a tough time, but if that tough time stretches into years, that attention fades. It’s not because those people are any less supportive; it’s just that everyone has their own lives to live, and longterm illness is not only draining for the patient, but also for the supporters. It’s just the nature of the beast. I can personally testify to the fact that living with a longterm illness makes you feel terribly lonely at times. The longer your illness goes on, the more your relationships suffer, and the less interaction you often have with others. Even with the support of your closest loved ones, it’s not uncommon to feel more and more disconnected with the world. Many people with chronic illness once lived very active lives, so to lose all of that is often devastating. Most people would not choose this life. And typically, patients are not looking for pity, but we are looking for understanding, a sense of compassion, and the same human respect you’d give to anyone else.

• Invisible Illness Myth #3: Funny how that person made it to one event, but then didn’t feel well enough to attend the next event. How can you feel okay one minute and sick the next?

• Reality: This is very typical of someone living with a chronic illness. We have good moments and bad moments. Symptoms are ever-changing and unpredictable, so when we experience a spurt of energy, we will probably do our best to take advantage of that. On my worst days, I’ve been completely debilitated and bedridden. On my best days, I might be able to handle one or two routine activities, but any more than that will result in the need for days of “recovery” after (this usually translates to bed rest). Being able to participate in life events usually means planning ahead and reserving our energy when needed. Chances are, we will “run out of gas” at some point, so unfortunately, this translates to having to choose one event over another a lot of the time. It’s not that I don’t want to be there; it’s that my body will only allow me to do so much.

Finally, I think it’s interesting to note that Yolanda Hadid had a seemingly lovely life: a beautiful family, a gorgeous home, a successful career behind her, wealth, and an active lifestyle. It’s true, we would eventually learn that her marriage was in trouble, but there’s a good chance some of that came as a result of an illness that stole her ability to lead a normal life (and ultimately, it’s a complicated subject that’s not really any of our business). Regardless, Yolanda is an example of the fact that you can have a (seemingly) perfect life, but when a health crisis strikes, all of that falls to the wayside. In the end, health — particularly illness — is the common denominator among all of us, and there’s no amount of money, fame, or power that can change that. Illness does not discriminate. It can strike (and destroy) anyone. It is both the fortunate and unfortunate force that universally connects us, and in some ways, acts as a powerful “equalizer” in an otherwise inequitable world.

So instead of being quick to judge each other, let’s try to understand one another and show some compassion, because we all know this could happen to any one of us or to anyone we love. To learn more about what it’s like to live with an invisible illness, I encourage you to check out Living with an Invisible Illness, Part 1.

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